Childhood Dementia Family Coordinator

Childhood Dementia Family Coordinator (2 Roles Available)

• Reports to: National Services Manager

• Location: Perth WA (hybrid + travel)

• Position Type: Part Time (0.6 FTE)

• Term: Contract 18 months (with intention to extend/ongoing)

• Classification: SHCADS Level 5/6 ($105,558 to $120,437 FTE) + superannuation + NFP salary packaging

About us

At Childhood Dementia Initiative (CDI) we are working to create sustainable global health solutions for childhood dementia. We drive world-first action for every child and young person living with dementia so that we may achieve the following outcomes:

• Treatments and cures available for children with dementia;

• Access to equitable and quality care for children with dementia and their families; and

• Childhood dementia is a global health policy priority.

Our Values: Our work is guided by our values:

• We are bold in all we do and seek to achieve.

• We amplify the voices of our families and the case for change.

• We are transparent and flexible in all aspects of our work.

• We unite bringing together those who can make the changes needed

About the role

Join our team as a Childhood Dementia Isla Guide — Childhood Dementia Initiative's world-first family support coordination role.

Bring your extensive skills and experience in the health, human services, disability, or education sectors to help shape something genuinely new: a world-first pilot role, co-designed from the ground up with families affected by childhood dementia to close a gap the care system has long recognised but never filled. The role is a specialist family navigation and coordination role that reduces the burden that fragmented systems place on children and families living with childhood dementia.

The Isla Guide supports a caseload of families and the professional and service networks around them, building capability through education, information-sharing and consultation with treating teams and sector partners. This combined focus strengthens both the family experience and the responsiveness of the broader care system, from diagnosis through the stages of illness and into bereavement.

The Isla Guide walks alongside families, supporting navigation, coordination, and family capacity-building in partnership with treating teams. This role does not provide clinical care, clinical assessment, or case management.

The skills & experience you’ll bring

• Degree or tertiary qualification in nursing, allied health, human services or an equivalent field.

• Experience mapping and navigating complex systems across health, disability, NDIS, education and community services.

• Knowledge of, or demonstrated ability to rapidly learn, the specific challenges faced by children and families living with childhood dementia.

• Demonstrated ability to build trust and act as a connector across interdisciplinary, cross-sector networks.

• A genuine commitment to Childhood Dementia Initiative's mission, including a willingness to contribute to the ongoing development of this role through co-design and review processes.

• Willingness to travel to meet families in their own homes or schools.

• The role will require travel and the use of your private vehicle, for which a kilometre allowance is payable. You must have a current unrestricted WA driver’s licence and a suitable vehicle, insured for work purposes.

• Current Police & WWC Checks.

• The right to reside and work in Australia.

How to Apply

Join our team today! Please send your application - including Resume and Cover Letter - to Alicia Noble.

Applications are open until 20 September and we are reviewing applications as they are submitted. If you have any questions, would like a copy of the full job description, or are excited about the role but don't meet the exact requirements we’d love to connect. Please email: ••••@childhooddementia.org